The Care Quality Commission have today (25th March) published an update on progress since publication of their ‘Out of sight – who cares?’ report written in October 2020.
Learning from Lives and Deaths People with a Learning Disability and autistic people (LeDeR)
A total of 3,304 deaths of people with a learning disability were reported to LeDeR during 2021. Based on deaths reported to LeDeR, on average, males with a learning disability die 22 years younger than males from the general population, and females 26 years younger than females form the general population.
The review makes several concerning findings, reflecting issues already highlighted by individuals with learning disabilities and their families:
- Reviewers judged DNACPR documentation and processes to have been correctly followed in only 60% of the deaths in 2021 where a DNACPR was present
- People of Black, Black British, Caribbean or African, mixed ethnic group and Asian or Asian British ethnicity died at a younger age in comparison to those of white ethnicity.
- 49% of deaths were rated as “avoidable” for people with a learning disability. This compares to 22% for the general population
- During both 2020 and 2021, the proportion of excess deaths were more than double for people with a learning disability compared to the general population.
NHS England have also published their Action from Learning Report: Action-From-Learning-Report-2021-22.pdf (leder.nhs.uk)
The health inequalities faced by children and adults with learning disabilities are well known. The government must take immediate action (beyond ongoing activity) to address these inequalities by taking forward the recommendations in the LeDeR report.
This must include recognition of the inequalities faced by individuals with learning disabilities in the NHS Core20PLUS5 approach tackling health inequalities.
Support from the CBF
We understand these figures are likely to be distressing for the families of children and adults with learning disabilities.
Resources on our website
Please see our website for resources and information for family carers related to healthcare for children and adults with learning disabilities:
Family Support Service
We are open at the following times:
- Monday – Thursday: 9am – 5pm
- Friday: 9am – 3pm
We offer information about challenging behaviour to anyone who provides support to a child, young person or adult with a severe learning disability. We can also signpost you to other specialist organisations and sources of information.
Please note we are a small support service so you may not be able to get support straight away. We will support families with urgent concerns as a priority.
Professionals are also welcome to contact the CBF.
Today (9th December 2021) the report from an independent investigation into the death of Clive Treacey was published, concluding that his death was “potentially avoidable”.